“Have you talked to your parents about the kind of care they would want? Don’t be scared to look ahead and figure out what the options are. You’ll be better prepared to make informed decisions when the time comes, without the accompanying emotional stress.” – Barbara Dylla, a former caregiver in Montreal
Due to the progression of Alzheimer’s disease and other dementias, the person with dementia will eventually become unable to express their wishes. Family members and health-care professionals often have to make difficult decisions on behalf of the person with dementia. Families can benefit greatly from knowing the person’s wishes in advance.
It’s human nature to try to avoid talking about sad and difficult topics like end of life. But by taking an active role in preparing for this stage, individuals and families can get on with their day to day lives knowing they have taken important steps to ensure that the care provided at the end of life will reflect the person’s wishes, beliefs and values.
Most of us want to die in a peaceful, dignified and pain-free way, close to the people who are important to us and with our wishes, beliefs and values respected. Research indicates that discussing goals and preferences regarding end-of-life care early on increases the likelihood that a person with dementia will be comfortable at the end of life.
Talking early on about what the person wants
Shortly after Juliet was diagnosed with Alzheimer’s disease at 65, she and her partner Martin began to talk about her wishes with respect to care throughout the course of the disease and at the end of her life. She expressed her thoughts verbally and updated her will to reflect her wishes in case of incapacity. “Juliet was lucid, and able to read and write. She wanted no heroic efforts to prolong her life beyond what was reasonable and didn’t want to be kept alive by artificial means. She was clear and emphatic about that because of her past experiences with one sibling and her parents,” says Martin, a retired engineer in Edmonton.
He too strongly believed in talking openly and frankly with Juliet about the end of life. “I felt it was important to talk with Juliet about death. My mother took a long time to die from cancer. My parents never spoke about death with each other, even at the very end. I wanted it to be different with Juliet and me,” says Martin.
Juliet told him that she wanted her cremated remains to be buried in a cemetery in Grande Prairie, Alberta where she was born and raised. They also pre-arranged her funeral five years before Juliet died in December, 2013. “We talked all the time about all kinds of things. To know specifically what she wanted in end-of-life care and after-life care was extremely important and helpful. Pre-planning the funeral was a big decision to make but it took a tremendous amount of pressure off,” says Martin.
Next section: Advance care planning